What Dean and I went through was frightening and isolating and confusing. How is it, these days, getting diagnosed and dealing with prostate cancer treatment, especially with libido-draining hormone ablation treatments? It’s instructive to ask what wasn’t there way back in 2002, when Dean heard the words “You have prostate cancer,” and I caught my breath.

*ListServs hadn’t arrived yet–There were probably chatrooms; but not very many people were chatting about treatment or about the aftermath– E.D. or libido or continence–either on or off the internet. The fear and social stigma having, these days, abated, Us Too, just to cite one organization, maintains web addresses specific to many topics and populations: seeds (seedpod), cryo (iceballs), prostate cancer and intimacy (pcai), to name a few. For a more complete list, see my website (www.victoriahallerman.com).

*Inclusive–Male/Female–Support Groups never felt like a comfortable option to us. Man to Man and Us Too existed, but I don’t think the outreach was sufficient to encourage either of us to come to a chapter meeting. Why? Because everything surrounding prostate cancer was so hush-hush; not that men–and urologists–are entirely “out” about it today, but the comfort level is sufficient to draw more people to meetings and the dialogue is generally freer in these meetings than it was even five years ago.

*To expand upon that point, the dialogue about prostate cancer and treatment wasn’t as brave or open as it is now. Dana Jennings in the New York Times spares none of his readers the details of treatment and post-treatment life, both in his blog and on the page. Why is that? Well, for one thing, it’s okay for men to discuss E.D., incontinence, even libido in public without feeling emasculated. In fact, the word “emasculated” is offensive and totally obsolete. Eight years ago, if I was lucky enough to stumble on a discussion of male sexuality, it focused on E.D., entirely ignoring libido. The two were somehow one and the same, even to doctors, who saw things purely in terms of mechanics. Men who have undergone prostatectomy often emerge with E.D., but with intact libidos, whereas radiation and/or hormone ablation patients may be challenged both mechanically and mentally. This is now recognized.

*The dialogue is also more inclusive: wives and partners are considered part of the treatment population, not just bystanders or caregivers. It was maddening, when Dean went through treatment, to be told I should take care of myself, “for his sake…” that is, so I could be a more effective and supportive caregiver. I think there might have been one organization for partners, but now there are many (Yahoo maintains one, The New Prostate Cancer Infolink hosts several different forums for women on various topics, and of course so does Us Too).

Where does this leave us? A recent visit to Amazon.com yielded 7,135 book titles for breast cancer and 3,567 for prostate cancer. Prostate cancer has a long way to go before it becomes as well-organized well-funded and well-supported as its sister disease, but we’re on our way.

The Way it Was
I first heard the words “chemical castration” from my orthopedic surgeon. We were chatting, and he asked after my husband. This was about a year after Dean’s diagnosis (prostate cancer) for which he’d been treated with a combination of Androgen Deprivation Therapy and radioactive seed implantation. ADT is chemical castration. By the time the orthopedist dropped it casually into our conversation, I/we pretty much knew that Dean had, in essence, been castrated. What else is a systematic shut-down of the body’s testosterone?

And yet it shocked me to hear these words. Why did I have to hear them first from a doctor friend in casual conversation? The urologist who first treated Dean had assured him that eventually his life would come back to normal. He’d been vague about the treatment aftermath, and we should have asked more questions, but we were scared, so we just went along.

By the time my intellect caught up to what my gut already knew, there was no doubt that our lives together had changed. First, there’d been the hot flashes, the lethargy, the passivity of a body learning to live without a hormone that has defined the self. That’s what testosterone does for men, as estrogen, progestin and oxytocin do for women. But we women are prepared all our lives for “the change,” which happens slowly, beginning in peri menopause, and ends a few years later. Men who undergo chemical castration, with the final unkind outcome of erectile dysfunction and low– or no–libido (desire), often know little or nothing about possible consequences going in.

Artificial andropause (my personal definition of ADT) is chemically induced via pills and injections, and effective in only a few months. Because testosterone encourages prostate cancer growth, these treatments are part of the arsenal doctors have assembled to halt PCa or slow it down. Some men receive ADT when their cancer returns; others receive it in late age when radiation or surgery are not viable options. A third less common use, to shrink the prostate in preparation for radioactive seed implantation, was the strategy in Dean’s case; an unwise one, given his age (he was young enough for the best alternative, prostatectomy) and the size of his prostate (90 cc’s, so huge that the ADT actually failed to shrink it sufficiently prior to seed placement). That we didn’t do more research is our regret, one we’ve shared and dealth with via writing and publication (How We Survived Prostate Cancer: What we did and what we should have done, Newmarket Press, 2009).

When we emerged on the other side of treatment, we both had changed, and I was beginning to question whether we had a marriage at all. While ADT went on, not only did we not touch each other, but it seemed that touching of any kind was, for him, repulsive. An insomniac to begin with, he was up all night, those long nights. Between the aftereffects of radiation (burning, surges) and the results of ADT, he was a mess. He wanted to sleep alone, and so my mattress in the attic became my full-fledged apartment. That’s when I began to wonder what the difference between roommates and marriage partners really is. I cried myself to sleep most of those nights.

Many marriages break apart at this juncture; there is research to support the idea that partners of men treated for PCa are often more depressed after treatment than the men themselves. Our marriage didn’t break up. I kept a journal which became the book, a way of talking to the world and to my husband. Dean’s voice entered the narrative and it became ours, part of the new normal we’ve been searching for ever since cancer upended things.

In those long-ago days (8 years ago) hardly anybody was talking about aftereffects of treatment. Support groups and websites existed, but the general narrative was, “Be thankful cancer has been beaten.” Quality of life was on the back burner, because the whole idea of surviving cancer was so new. The effects of treatment, especially hormone blockade, went undiscussed in many doctors’ offices. That’s why “chemical castration” was new to me as a concept a year after my husband had undergone it.

Another reason for this silence is official ambivalence. It must be difficult for urologists to know how profoundly the lives of patient and partner will change, especially if these urologists happen to be men, as most are. Since elemental ideas of manhood–on the street, at the office, wherever–are bound up in the eyes of society with sexuality and sexual performance (we all know that “potent” has many meanings) the men who receive ADT and the doctors who administer it have, until recently, resorted to a complicit “Don’t ask, don’t tell.”
Those days are gone, I’m pleased to say, and tomorrow I’ll say why I think that’s true. Stay tuned.
(read The Way it Is tomorrow).

In NYC where I live, there’s a sign on the side of a building–on West 72nd Street, to be exact– which claims that “Depression is a flaw in chemistry, not character…” It is, in my opinion, obvious that depression is NEVER a flaw in character–what an absurd notion. But what about the reverse; is it always a flaw in chemistry? IS IT A FLAW AT ALL? If it is one, then we must rush to correct it; but perhaps the depressed person–for example, the prostate cancer survivor or his partner–is simply mourning for what is lost, coping with a new and scary landscape, searching for a new identity.

There has been much recent flap lately in PCa circles about how to cope with the depression that often follows treatment. Whatever treatment it was: prostatectomy, seeds, beam radiation, cryo, chemo, hormones, proton beam, even HIFU, it is likely to have changed forever the way a man lives and experiences himself as a sexual being. Then there’s the flip-side depression: the partner’s. What do you do when you’re the one left back on shore, the one whose body hasn’t forever been altered? The one, perhaps, whose libido is still active?

Some people are turning to antidepressants, and some doctors are advocating this kind of treatment. On the man’s side, the fact that many such drugs hardly enhance erectile function should certainly be discussed. Beyond this, however, what is there in our culture that spurs us on to medicate everything?

Perhaps the way to cope is to go running or listen to music or redefine yourself as you are now. Join a community of others who have suffered the same way. Reach for the person on the other side of the room–or the bed; and don’t be afraid of who you are now. Depression may just be the bridge to the next part of your life. That’s what I’d say to anyone, post prostate cancer, who reaches first for a bottle of pills.

Medicine has its own fashions, and while they rule, they rule. The healthcare fashion runway (medical journals or labs, clinics, newspapers, websites), features models of its own (the people whose lives have been saved or improved in a noticeable way by one or another treatment or device). But ways of thinking, like fashions, turn, sometimes on what seems like a research whim, and this year’s wonder device, supplement or brilliant treatment strategy may end up suddenly in the has-bin.

That’s how it shook down a year or two ago for Hormone Replacement Therapy, last decade’s fountain of youth for menopausal women, now widely considered risky business. Vioxx went that direction. Antioxidents and Vitamin C. have lost their pizazz, as has glucosamine for arthritis. Even the unassailable mammogram, once important at forty is considered questionably useful at fifty or beyond.

Add to the list “P.S.A.,”an acronym that once stood for “Public Service Announcement,” until it became a synonym for worry in men of a certain age whose prostates might possibly harbor cancer. Prostate Specific Antigen, a normal protein in men’s blood that, when elevated, can signal prostate cancer, might also indicate Benign Prostatic Hyperplasia–or nothing. The often painful prostate biopsy that usually follows an elevated PSA, even when it yields positive results, won’t tell you or your doctor whether the prostate cancer in question is one of the fast-moving variety or the other far more common one you’ll die “with, not of.”

Mammograms, PSA–these tests cost us all a lot of money, and money is something we ought to be saving, isn’t it? ( starting with overinflated executives’ salaries might be more prudent). But what has really happened is that the optimism surrounding the tests’ universal use has begun to fade. Suddenly it isn’t clear if or why most of us should get them, and statistics aren’t making a case for continuance.

Well here are two cases: my sister, whose breast lump was removed at 71, and my husband, whose rapidly escalating PSA might have indicated virulent cancer (we’ll never know). Almost everybody knows someone who might have died if he or she hadn’t been tested. But these days, a kind of “ignorance is bliss” approach surrounds both these cancers; it’s almost “don’t ask, don’t tell.”

What’s changed? Our optimism concerning survival and treatability? Out with the old and in with the new: float another dress down the runway.

Millions of men woke this morning to the news that what had been done to their bodies in the name of stopping prostate cancer, may after all have been “a mistake.” Writing in The New York Times (Tuesday, March 10, 2010), Dr. Richard J. Ablin, who discovered prostate specific antigen in 1970, calls the routine use of P.S.A. to screen for prostate cancer “hardly more effective than a coin toss.” He points out (as many health-care professionals have been unwilling until recently to admit) that men, post treatment, “…in all likelihood can no longer function sexually or stay out of the bathroom for long.”

American men have, according to recent statistics, a 16 % lifetime chance of receiving a diagnosis of prostate cancer, but only a 3 % chance of dying from it, because most prostate cancers are slow-growing: the cancer you die with, not of.

Dr. Ablin admits, as we all know, that, so far, we can’t distinguish between the cancer that will kill you and the one that won’t.

Who is the “you” in the previous paragraph? A statistic or a real flesh-and-blood man?

How does Dr. Ablin imagine it feels to wake up and read that your life-altering treatment has been a mistake? What is a statistic to a life? How many men with rapidly-escalating P.S.A.’s had Gleason Scores of 7 or above and are alive today as a result of this test? Admittedly, my own husband, whose Gleason was a routine 6, might well have been unnecessarily treated, although his P.S.A. velocity at the time of prostate cancer diagnosis was notable.

It may be that Dr. Ablin’s metaphor, the coin toss, is off the point. It has been said that generally one in ten men with a positive biopsy has a fast-moving prostate cancer that will kill if left untreated.

Universal P.S.A. screening may bea coin toss; but its absence returns us to Russian Roulette. P.S.A. tells us that it might be cancer, and if so, a virulent bullet might be in one of several chambers. Surely knowing this is so, and going for a biopsy, painful as it is, is more valuable than ignorance. If, as Dr. Ablin suggests, “testing should absolutely not be deployed to screen the entire population over the age of 50,” then my husband, among others, might have waited long enough to hear the word “metastasis,” or the even more chilling, the words, “your cancer has gone to bone.”

If P.S.A. as a universal screening tool is inappropriate, then rather than scrapping it for the general population, perhaps doctors should learn to educate their patients and partners to the real truth about the likely sexual, urinary and even bowel consequences of treatment. Then men can make a truly informed choice, as many European men do, who choose to watch and wait.

As long as men are alive who have received these treatments in good faith, Dr. Ablin’s argument stands as the ultimate insult to their experience. He shames what he calls profit-driven public health initiatives, but there are men whose lives have been spared, and those lives are worth something after all. The real shame lies in valuing statistics over individuals.

“Study Finds Many Are Too Tired for Sex” notes the Science page of The New York Times (Tuesday, March 9, 2010). For men and their partners who’ve suffered and survived prostate cancer, it may come as a relief to learn we’re not alone. The article observes that “one in every four Americans married or living with someone say they are so sleep-deprived that they are often too tired to have sex.” Insomnia and sleep deprivation are obvious factors as are stress in its various guises–including work, health and fiscal matters; alcohol and late-night television weigh in too.

If the general public is already experiencing stress and sleeplessness, how much worse is it for couples post prostate cancer treatment? And how much farther down the list of physical needs might sexual activity be for these couples? Certainly, we’ve all suffered our share of sleep deprivation (I can easily recall my husband jumping up six or more times a night to urinate, and, as a result of treatments, he can add tinnitis (ringing in the ears) to his list of chronic afflictions. The cancer diagnosis itself is hardly “something to sleep on,” and then, for our particular population, add loss of libido for some men and the challenge of actually getting an erection for almost every man treated. Women are affected too, our sense of attractiveness perhaps diminished and our own sleep patterns and living patterns greatly altered.

How do we de-stress our lives? Is it possible to get rest? How does a couple go about reclaiming intimacy? We’re all working on these problems, and we’re not alone. Does anybody out there have any ideas for ways of reclaiming both rest and intimacy?

Why is libido the dark undiscussed corner of male sexuality? If you read Dana Jennings’ blog on the The New York Timeswebsite, he talks about libido as distinct from erectile function, but not many other men who are prostate cancer survivors do. And yet, women who suffer from sexual dysfunction talk mainly about their libidos. It would seem that for men sexuality is forever linked to the mechanics of the penis, so much so that libido is cast aside and forgotten.

There is a great difference between the desire to have traditional sex and the ability. Of the two, the greater and subtler challenge is desire: without it, even a man who has solved the problem of mechanics via pills, a prosthesis or a vacuum device is likely to have a hollow or ironic experience.

Out of the corner of his eye, my husband saw me in a revealing blouse, and it did something. But the lovely moment vanished, and we haven’t been able to get anything like it back for months. Dana Jennings describes similar moments. That’s how it is. There are a lot of guys out there with zero motivation on account of hormone ablation, which keeps the body from producing testosterone. In some men the loss of libido post hormone treatments is permanent; in others temporary. Nobody knows why. Only recently have some doctors begun to discuss these effects frankly with their patients before treatment. Each of us—both Pca men and the partners who live with them—has a different thing to struggle against…what an intricate process cancer survival can be.